~64 spots leftby Mar 2026

Patient Priorities Care for Dementia

(IN-TX-PPC Trial)

Recruiting in Palo Alto (17 mi)
Overseen byJennifer L Carnahan, MD
Age: 18+
Sex: Any
Travel: May Be Covered
Time Reimbursement: Varies
Trial Phase: Academic
Recruiting
Sponsor: Indiana University
No Placebo Group
Approved in 1 Jurisdiction

Trial Summary

What is the purpose of this trial?The goal of this pragmatic, embedded clinical trial is to analyze the implementation of Patient Priorities Care in primary care and geriatrics clinics with patients living with dementia or mild cognitive impairment. This study aims are: * demonstrate the feasibility of using the electronic health record to identify a diverse cohort of eligible patient and patient-care partner dyads who will engage in a Patient Priorities Care conversation with a trained facilitator. * demonstrate feasibility of pragmatically assessing clinical outcomes using the electronic health record, including a) number of days at home, b) total medications, and c) new referrals to specialist physicians. * examine key feasibility measures across racial, ethnic, and socioeconomic subgroups. Participants will receive a packet of information about Patient Priorities Care from their primary care clinic, in advance of their next upcoming clinic appointment. Individuals who receive a packet will have the opportunity to engage in a conversation about what matters most to them and what their priorities are, with trained facilitators at the clinic.
Do I have to stop taking my current medications for this trial?

The trial protocol does not specify whether you need to stop taking your current medications. However, the study will assess the total number of medications, so it's possible that medication management might be discussed during the trial.

What data supports the idea that Patient Priorities Care for Dementia is an effective treatment?

The available research shows that Patient Priorities Care (PPC) for dementia focuses on aligning healthcare with what matters most to patients. While specific data on its effectiveness for dementia isn't detailed, PPC is designed to improve care by considering patient preferences, which can lead to better satisfaction and outcomes. Compared to other treatments, PPC emphasizes understanding and incorporating patient choices, which is crucial for effective dementia care. This approach can potentially lead to more personalized and effective treatment plans, although more specific data on its direct impact on dementia outcomes would be beneficial.

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What safety data exists for Patient Priorities Care for Dementia?

The provided research does not specifically mention safety data for Patient Priorities Care for Dementia or its variants. The studies focus on general patient safety issues for individuals with dementia in hospital settings, highlighting challenges such as adverse events, increased length of stay, and the need for a multifactorial approach to improve safety. However, they do not provide specific safety data for the Patient Priorities Care treatment.

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Is Patient Priorities Care a promising treatment for dementia?

Yes, Patient Priorities Care is promising because it focuses on aligning healthcare with what patients with dementia find most important, which can lead to better care and outcomes.

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Eligibility Criteria

This trial is for English-speaking patients at Indiana sites or English/Spanish speakers in Texas, aged 40+, with mild cognitive impairment or dementia. They must be treated by a participating doctor and have an outpatient visit scheduled within two months.

Inclusion Criteria

Receiving care with a participating physician
Patients must meet all of the following criteria to participate in this study:
I am 40 years old or older.
+3 more

Exclusion Criteria

Is enrolled in hospice
I choose not to participate in the PPC conversation.
Participants who meet any of the following criteria will be excluded from the study:
+1 more

Participant Groups

The study tests Patient Priorities Care (PPC) in primary care and geriatrics clinics. It involves identifying eligible patients using health records, engaging them in PPC conversations about their priorities, and measuring outcomes like days at home.
1Treatment groups
Experimental Treatment
Group I: Patient Priorities Care Eligible Persons Living With Dementia and Mild Cognitive ImpairmentExperimental Treatment1 Intervention
Patients (and their care partners when available) will receive a packet of information about Patient Priorities Care, and when feasible, a trained facilitator(s) will initiate a Patient Priorities Care conversation with the patient or patient care partner dyad. This conversation will be documented in the Electronic Health Record.

Patient Priorities Care is already approved in United States for the following indications:

🇺🇸 Approved in United States as Patient Priorities Care for:
  • Multiple Chronic Conditions
  • Geriatric Care

Find a Clinic Near You

Research Locations NearbySelect from list below to view details:
Regenstrief Institute, Inc.Indianapolis, IN
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Who Is Running the Clinical Trial?

Indiana UniversityLead Sponsor
National Institutes of Health (NIH)Collaborator
National Institute on Aging (NIA)Collaborator

References

How do person-centered outcome measures enable shared decision-making for people with dementia and family carers?-A systematic review. [2023]To identify published evidence on person-centered outcome measures (PCOMs) used in dementia care and to explore how PCOMs facilitate shared decision-making and improve outcomes of care. To build a logic model based on the findings, depicting linkages with PCOM impact mechanisms and care outcomes.
Measuring Adoption of Patient Priorities-Aligned Care Using Natural Language Processing of Electronic Health Records: Development and Validation of the Model. [2021]Patient Priorities Care (PPC) is a model of care that aligns health care recommendations with priorities of older adults who have multiple chronic conditions. Following identification of patient priorities, this information is documented in the patient's electronic health record (EHR).
Recommendations to Deliver Person-Centered Long-Term Care for Persons Living With Dementia. [2022]Person-centered care (PCC) is the standard for the delivery of long-term services and supports (LTSS). In this article, we summarize the state of the science on meaningful outcomes and workforce development and discuss what is needed to ensure that person-centered LTSS becomes a universal reality. These 2 themes are intimately related: the dementia care workforce's capacity cannot be improved until care processes and outcomes that are significant to PCC are explicated. The LTSS workforce needs training in PCC as well as pragmatic measures to assess the quality of the care they provide. We conclude with several recommendations for future policy and practice-oriented workforce research.
Patient-Reported Outcome Measures to Inform Care of People With Dementia-A Systematic Scoping Review. [2021]Patient-reported outcome measures (PROMs) captures the patient's perspective regarding quality of life, daily functioning, symptom severity, and overall health, and how these may be impacted by health care or other interventions. PROMs are used in clinical quality registries (CQRs) for a number of diseases to assess the patient's perspective of the impact of clinical care on quality-of-life. This scoping review aimed to identify dementia-specific PROMs, determine how the PROMs are being used, and whether they are used within dementia registries.
Elicitation of quantitative, choice-based preferences for Person-Centered Care among People living with Dementia in comparison to physicians' judgements in Germany: study protocol for the mixed-methods PreDemCare-study. [2022]Person-Centered-Care (PCC) requires knowledge about patient preferences. Among People-living-with-Dementia (PlwD) data on quantitative, choice-based preferences, which would allow to quantify, weigh and rank patient-relevant elements of dementia-care, and identify most/least preferred choices, are limited. The Analytic-Hierarchy-Process (AHP) may be one approach to elicit quantitative, choice-based preferences with PlwD, due to simple pairwise comparisons of individual criteria from a complex decision-problem, e.g. health care decisions. Furthermore, data on congruence of patient preferences with physicians' judgements for PCC are missing. If patient preferences and physicians' judgements differ, provision of PCC becomes unlikely. An understanding of patient preferences compared to physician's judgements will support the implementation of truly PCC, i.e. state of the art dementia-care aligned with patient preferences.
Patient safety for people experiencing advanced dementia in hospital: A video reflexive ethnography. [2023]Patient safety for people experiencing dementia in acute hospitals is a global priority. Despite national strategies as well as safety and quality guidelines, how safety practices are enacted within the complexities of everyday work are poorly understood and articulated.
Prospective cohort study of adverse events in older people admitted to the acute general hospital: risk factors and the impact of dementia. [2021]Reported adverse events (RAEs) are relatively common in the acute hospital and are associated with significant mortality and morbidity. Dementia is increasing in hospital in-patients, however there have been few studies exploring risk factors for RAEs, in particular cognitive impairment and dementia. Our objective was to identify the prevalence of RAEs in older acute medical inpatients and associated demographic, clinical or cognitive risk factors.
The cost of hospital-acquired complications for older people with and without dementia; a retrospective cohort study. [2022]Increased length of stay and high rates of adverse clinical events in hospitalised patients with dementia is stimulating interest and debate about which costs may be associated and potentially avoided within this population.
How can we keep patients with dementia safe in our acute hospitals? A review of challenges and solutions. [2022]Maintaining patient safety in acute hospitals is a global health challenge. Traditionally, patient safety measures have been concentrated on critical care and surgical patients. In this review the medical literature was reviewed over the last ten years on aspects of patient safety specifically related to patients with dementia. Patients with dementia do badly in hospital with frequent adverse events resulting in the geriatric syndromes of falls, delirium and loss of function with increased length of stay and increased mortality. Contributory factors include inadequate assessment and treatment, inappropriate intervention, discrimination, low staff levels and lack of staff training. Unfortunately there is no one simple solution to this problem, but what is needed is a multifactorial, multilevel approach at the seven levels of care - patient, task, staff, team, environment, organisation and institution. Improving safety and quality of care for patients with dementia in acute hospitals will benefit all patients and is an urgent priority for the NHS.
Patient safety. Remember who it's really for. [2004]Patients appear in the patient safety agenda in three important places: first and foremost as the individual most likely to experience the positive benefits of good care or negative consequences of unsafe care; second, as surveyors of quality of care indicators; and finally, through their presence as patient representatives on institutional safety committees. However, patient safety programs largely address provider-interests, and many times overlook patient preferences and needs. Active engagement of the patient in all aspects of the patient safety agenda is necessary for its success. Patient safety, then, requires: a comprehensive agenda informed by patient preferences and experiences; an informed and motivated populace; mechanisms integrate safe practices and patient preferences, and investment in safety-enhancing devices and care strategies.
Person-Centred Dementia Care in an Acute Hospital: Experiences from Nurses Working in a Specialized Dementia Unit. [2023]Person-centred care (PCC) is synonymous with best practice in the care of persons with dementia. However, the research focus has been in long-term care settings with less attention in acute hospitals. We aimed to study the perspectives and experiences of nurses implementing PCC in an acute hospital dementia unit (Care for Acute Mentally Infirm Elders [CAMIE]).
Do They Align? Congruence Between Patient Preferences of People Living with Cognitive Impairments and Physicians' Judgements for Person-Centered Care: An Analytic Hierarchy Process Study. [2023]Person-centered care (PCC) requires knowledge about patient preferences. Among people living with cognitive impairments (PlwCI), evidence on quantitative, choice-based preferences, which allow to quantify, weigh, and rank care elements, is limited. Furthermore, data on the congruence of patient preferences with physicians' judgements for PCC are missing. Such information is expected to support the implementation of PCC; state-of-the-art medical care aligned with patients' preferences.
Priorities and Preferences of People Living with Dementia or Cognitive Impairment - A Systematic Review. [2022]Knowledge about the priorities and preferences of people living with dementia (PwD) might help to individualize treatment, care, and support, which could improve patient-related outcomes. This study aimed to summarize preferences of PwD or people with mild cognitive impairment (MCI), considering all relevant aspects of health care and everyday life.